Re: S - (to S and M from Joan)

[Guest guest]

Dear hurting and ,

I understand exactly what you are both describing ... please see my comments in red below ...

Praying you both (and all) feel better very, very, very soon,

Joan

M, yeah, it's like someone stabs you in the leg with a knife (this is the neuopathy ... I get the hot, burning knife pain in my buttocks, center of lower spine, and legs...it's just awfully painful!.) It hurts so bad that I actually cry out in pain. (Poor, sweet ... I know you do sweetie ... it does hurt so much that we are brought to tears ... I went to the ER one nite it was so bad ... actually, if I had gone to the ER each time it got that bad I'd ow our local hospital a lot more than I already owe them since my co-pay is $100 if I am not admitted ... anyway, I was on all fours, unable to get up to even get to the bathroom ... Joe and my father decided they were taking me ... I received an injection of "dilaudid" which is 8x stronger than morphine ... believe me, but I'm sure I won't have to try hard to make you understand! ... I spend $100/night to get just a few hours of relief from that level of pain!) My right hand gives me those finger pains, too. Both my hands get so stiff and ache. (Yes! ... I have various types of pain in my wrists/hands/fingers and ankles/feet/toes ... I get the "arthritic" aka "arthralgia" in hand/wrist/finger area and ankle/feet/toe area, as well as knees; I also have the neuropathic pain in my feet; and in my wrists, I get this really, really strange and very painful feeling ... as if there is a rubber band wrapped tightly around the veins in my wrists.) My doc said it was probably arthritis. And that was the end of that. hmmmm. (The only thing I've noticed help the arthralgia type pain are NSAID's -- motrin, ibuprofin, naproxen, etc., but most cannot tolerate them for any extended period of time due to them being so harsh on the stomach.) The shooting pains in my right hand are mostly in my thumb and the next two fingers. (A neurologist at Univ. of PA recently told me that the thumb and first two fingers indicated "carpel tunnel" ... my EMG also showed severe "carpel tunnel" ... and indicated I needed bi-lateral surgery ... I've discussed this with my sarcoid dr., knowing that this inflammation causing the same end results as carpel tunnel is all sarc related. I told her that I was against having a surgery if there is a 50/50 chance the problem will come back due to the sarcoid ... she said, "why don't you at least talk to a neurosurgeon ... the surgery may be worth it ... we already know that without the surgery, nothing will change; with surgery, there is a chance of improvement." ... so, that is where I am now ... as soon as we get my "brain" issues resolved, I'll work on the wrists/hands issues. What absolutely does help, however, are the wrist braces ... it only they should be worn 24/7 ... it takes about a day or two to get used to them, but in no time at all, you will feel uncomfortable without them on as the pain/tingling will start right back up ... these can be purchased at any medical supply store or pharmacy ... I have purchased from both ... I must say that I like the ones sold at CVS, Eckerd Drugs, Wal-Mart, etc., the best ... they are $24.99 ... if you get a script from your dr., your insurance will probably cover it.) I have this cream that I rub in and it seems to help to take the edge off a little. (What is it called? ... I'd like to purchase it!!!) It doesn't

help that it's my writing hand. maybe that's why it hurts more. (you are correct ... and typing definitely makes it worse on either hand.) Once when I was gonna have surgery they told me I was low in potassium and had to give me a shot before operating. Next time I see the doc I should ask about my potassium levels. (Yes, you should ... eat a banana, take iron supplements) Have you ever heard of having a laminectomy? Someone else mentioned it a couple of weeks ago and I did some searching on it and if sarc is in the spine they can supposedly remove it....I suppose it depends on where in the spine it is found. Sounds abit scary though... (yes, it does ... I've never heard of it, but will look it up also) I just have general all over back pain but yours sounds awfully painful. Would a heating pad help at all or make it worse? When I had a back injury years ago I used Mineral Ice and it at least helped me to sleep a little. I've been taking MSM and it does help alot with my pain levels. (Yes!...I recommend MSM almost as much as I recommend Methadone for the spine ... strange that for me at least, the Methadone seems to only help the spine pain ... and ignores the ankles, wrists, and knees. I really hope in the end that the doc's do not believe it is the methadone that is causing my brain issues ... I and those around me will have to suffer cause I am not going to stop the methadone and suffer back pain like that again for anything! ... I don't drive, so I'm not putting anyone in danger, so I've made my mind up ... I rather say crazy things from time to time than to experience that level 15+ spine pain ever again!) hope you feel better soon. How is your heart doing? hugs S. Mommer wrote:

S. This is M I've been having those same leg cramps. (I wish I had some advice for this ... do you take diuretics?...if so, take it with a glass of orange juice ... I know the others take something for this, but I forget the name of the medication) I take potassium and I still get them,I'm afraid to stretch I may end up screaming from the pain. (I understand from having experienced them from time to time myself, but it is the stretching that will get it to stop, so I bite the bullet ... and if I let out a quiet or very loud yelp, so be it ... it hurts!) My huge pain issue is my spine I'm wondering if the sarc has moved into my spine it hurts me so so bad I take oxycodone each night for pain and sometimes that doesn't even touch it. I've been getting the horrible bone pain in my finger bones not in the joints inbetween the joints right in the bone. (Again, understand both ... , oxycodone should really be used for breakthrough pain ... do you have a pain specialist who can treat you with morphine-based drugs like duragesic/fentenyl (sp?) patches or methadone? ... Both 's, you really do need a long-lasting drug and a breakthrough pain drug ... I will pray your pain disapears on its own, but if it doesn't, I will pray your doctors will supply you with the right medications ... love, hugs, and many prayers, Joan)

M

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

Dear Joan, the name of the cream is TriVita Quick-Relief Gel. I guess you have to use it a couple of times daily to get the best relief from pain and use it with their quick pain relief supplements. I have both but don't always remember to use them in conjunction with each other. From your responses to both our posts I can tell you really do understand and probably have it even worse. It's reassuring to be able share our pain with others who won't give us such pitied or shocked looks. It's just a part of our daily lives. And I thought i was the only one with glut(pronounce gloot)(the butt) pain...lol. I get pain in the gluts and even rectally. Anybody want a knife up the ...!? From what you say I might have carpel tunnel...but I've heard that for some people it doesn't work to have surgery. I always get skin buildup/skin growths around scar tissue so I would be

afraid sarc would make any surgery abit scary. I might get some wrist braces and see if they help, too, along with the other stuff I take. It's a good thing you have people to lift you off the floor . I don't cuz my husband pulled his shoulder out of it's socket about six years ago and even got a workman's comp. settlement. He drops stuff all the time and i sure wouldn't want it to be me. Guess I'd have to call an ambulance or try to drag myself up...which I have done before. Take it easy today sweetie, and thanks for the info . I always miss ya when you're too sick to post. love and hugs S.pickstands@... wrote:

Dear hurting and ,

I understand exactly what you are both describing ... please see my comments in red below ...

Praying you both (and all) feel better very, very, very soon,

Joan

M, yeah, it's like someone stabs you in the leg with a knife (this is the neuopathy ... I get the hot, burning knife pain in my buttocks, center of lower spine, and legs...it's just awfully painful!.) It hurts so bad that I actually cry out in pain. (Poor, sweet ... I know you do sweetie ... it does hurt so much that we are brought to tears ... I went to the ER one nite it was so bad ... actually, if I had gone to the ER each time it got that bad I'd ow our local hospital a lot more than I already owe them since my co-pay is $100 if I am not admitted ... anyway, I was on all fours, unable to get up to even get to the bathroom ... Joe and my father decided they were taking me ... I received an injection of "dilaudid" which is 8x stronger than morphine ... believe me, but I'm sure I won't have to try hard to make you understand! ... I spend $100/night to get just a

few hours of relief from that level of pain!) My right hand gives me those finger pains, too. Both my hands get so stiff and ache. (Yes! ... I have various types of pain in my wrists/hands/fingers and ankles/feet/toes ... I get the "arthritic" aka "arthralgia" in hand/wrist/finger area and ankle/feet/toe area, as well as knees; I also have the neuropathic pain in my feet; and in my wrists, I get this really, really strange and very painful feeling ... as if there is a rubber band wrapped tightly around the veins in my wrists.) My doc said it was probably arthritis. And that was the end of that. hmmmm. (The only thing I've noticed help the arthralgia type pain are NSAID's -- motrin, ibuprofin, naproxen, etc., but most cannot tolerate them for any extended period of time due to them being so harsh on the stomach.) The shooting pains in my right hand are

mostly in my thumb and the next two fingers. (A neurologist at Univ. of PA recently told me that the thumb and first two fingers indicated "carpel tunnel" ... my EMG also showed severe "carpel tunnel" ... and indicated I needed bi-lateral surgery ... I've discussed this with my sarcoid dr., knowing that this inflammation causing the same end results as carpel tunnel is all sarc related. I told her that I was against having a surgery if there is a 50/50 chance the problem will come back due to the sarcoid ... she said, "why don't you at least talk to a neurosurgeon ... the surgery may be worth it ... we already know that without the surgery, nothing will change; with surgery, there is a chance of improvement." ... so, that is where I am now ... as soon as we get my "brain" issues resolved, I'll work on the wrists/hands issues. What absolutely does help, however, are the wrist braces ... it only they should be worn 24/7

.... it takes about a day or two to get used to them, but in no time at all, you will feel uncomfortable without them on as the pain/tingling will start right back up ... these can be purchased at any medical supply store or pharmacy ... I have purchased from both ... I must say that I like the ones sold at CVS, Eckerd Drugs, Wal-Mart, etc., the best ... they are $24.99 ... if you get a script from your dr., your insurance will probably cover it.) I have this cream that I rub in and it seems to help to take the edge off a little. (What is it called? ... I'd like to purchase it!!!) It doesn't

help that it's my writing hand. maybe that's why it hurts more. (you are correct ... and typing definitely makes it worse on either hand.) Once when I was gonna have surgery they told me I was low in potassium and had to give me a shot before operating. Next time I see the doc I should ask about my potassium levels. (Yes, you should ... eat a banana, take iron supplements) Have you ever heard of having a laminectomy? Someone else mentioned it a couple of weeks ago and I did some searching on it and if sarc is in the spine they can supposedly remove it....I suppose it depends on where in the spine it is found. Sounds abit scary though... (yes, it does ... I've never heard of it, but will look it up also) I just have general all over back pain but yours sounds awfully painful. Would

a heating pad help at all or make it worse? When I had a back injury years ago I used Mineral Ice and it at least helped me to sleep a little. I've been taking MSM and it does help alot with my pain levels. (Yes!...I recommend MSM almost as much as I recommend Methadone for the spine ... strange that for me at least, the Methadone seems to only help the spine pain ... and ignores the ankles, wrists, and knees. I really hope in the end that the doc's do not believe it is the methadone that is causing my brain issues ... I and those around me will have to suffer cause I am not going to stop the methadone and suffer back pain like that again for anything! ... I don't drive, so I'm not putting anyone in danger, so I've made my mind up ... I rather say crazy things from time to time than to experience that level 15+ spine pain ever again!) hope you feel better soon. How is your heart doing?

hugs S. Mommer wrote:

S. This is M I've been having those same leg cramps. (I wish I had some advice for this ... do you take diuretics?...if so, take it with a glass of orange juice ... I know the others take something for this, but I forget the name of the medication) I take potassium and I still get them,I'm afraid to stretch I may end up screaming from the pain. (I understand from having experienced them from time to time myself, but it is the stretching that will get it to stop, so I bite the bullet ... and if I let out a quiet or very loud yelp, so be it ... it hurts!) My huge pain issue is my spine I'm wondering if the sarc has moved into my spine it hurts me so so bad I take oxycodone each night for pain and sometimes that doesn't even touch it. I've been getting the horrible bone pain in my finger bones not in the joints inbetween the joints right in the bone. (Again,

understand both ... , oxycodone should really be used for breakthrough pain ... do you have a pain specialist who can treat you with morphine-based drugs like duragesic/fentenyl (sp?) patches or methadone? ... Both 's, you really do need a long-lasting drug and a breakthrough pain drug ... I will pray your pain disapears on its own, but if it doesn't, I will pray your doctors will supply you with the right medications ... love, hugs, and many prayers, Joan)

M

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

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